Busting out bad joints all over the place

So, in my new calendar of keeping up with blogging, I have marked Wednesdays as the point in the week where I’m going to talk about the disease, or, rather, living with the disease. Part of that is posting up horrible self-portraits to try and get over some the acute anxiety I feel about being a diseased person. The whole point of the small changes that I have been trying to make is getting back to a place where I don’t let the disease define me. But when it’s staring you right IN THE FACE sometimes it’s hard to get passed it. Puffy cheeks, chubby body, exhausted, bags under your eyes, sinus pain — there’s not a lot I can do about the symptoms. At least I am back to the small dose of prednisone this week (only 5mgs), which means that my appetite and cravings should go back to normal over the next couple weeks.

The conflict surrounding all of that sometimes overwhelms me. My energy curdles throughout the day, turns sour like milk left in the sun, and by the time I get home I’m cranky and unhappy. I can rally for the baby, spend a somewhat energetic few minutes playing with him before bath time if I’m not totally wrecked but then, nothing. And herein lies the really hard part — because there’s so much I want to do.

Living with constant, persistent illness is hard, physically, psychologically. And trying to manage that along with the daily grind of everyday life, well, it’s no wonder some people simply don’t survive. So, I’ve been making my life small these days, like I’ve been talking about a lot lately. Last week I focused on grooming (it’s sounds ridiculous, doesn’t it?). I got my hair done, my eyebrows done, and a pedicure is on the horizon. Feeling like yourself and not your diseased self is a good start. This week I’m trying to take care of some life-organizational things in small batches. Next week I’m getting back to diet-related stuff. I’m going to try one day without sugar. One day at a time. One goal at a time. One success at a time. It takes the pressure off to be completely better, because I’m still feeling so very very tired, but my mind just won’t quit.

7 Responses to “Surviving the Unsurvivable”

You are right on Deanna.
you aren’t your disease. YOu are a person who happens to be living with a disease. I live with depression and it’s always lurking in the background. There are times when I give into it for a little while, but then I pull myself back up and on I go. I have learned tricks that really do help. Lately it’s been tough, so little things like plucking the eyebrows is a big accomplishment. I keep working at those things and I do feel better about accomplishing them. It seems to me that you have the right approach. Keep plugging away.

You know, I’ve been reading your blog nearly every day and I really should have been commenting along the way, but I think you’re amazing and want to echo what Heather said. It sounds like so much has become unbearable in your life, and yet you push through it and still find these magical moments, which is such an important thing. Keep doing that, and keep talking about it, because it takes a community to help you get through difficulties. 😉

And by the way, your hair looks FABULOUS!!!! I really like that photo of you. 🙂

what nikki said! the fact that you can still find joy in your life and take the time to appreciate the little things, in spite of what’s happening, is not only a testament to your strength and your incredible, indomitable spirit, but it is a shining example for those of us who have lesser issues to deal with and get stuck in the feel-sorry-for-ourselves rut. you are an inspiration, D. truly. xoxox

Reading this mid day reminded me what an incredible struggle you have to go through every day. You always seem so vivacious that I forget you are even ill and how difficult it must be. Lots of love and I dig your hair.

I dig your hair, too! And ditto on how your blog is a constant inspiration! It’s hard enough to face the daily grind and get stuff done even when we’re at our best sometimes… I started thinking about chronic illness while my broken wrist was healing, and how it was only as I gradually started to get better that I realized how bad I’d been feeling and how much I’d still been beating myself up over not feeling up for doing more. And how all that was still something super minor on the scale of what some people manage every day (illness, depression, kids, jobs, etc!). Cheers to you and your spirit and perseverance.

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Girl with titanium hip will rock. Girl with titanium hip will write. Girl with titanium hip will read. Girl with titanium hip will battle crazy-ass disease called Wegener's Granulomatosis. Now stuff that in your spelling bee!